British Heart Foundation
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Help needed cardiomyopathy getting really bad

Hi any advice would be much appreciated I have dialated cardiomyopathy that I have had for the last 5 years everything was fine in this time and my injection function was 20/25% but with the meds all was good running round with the kids swimming surfing I had a bit of a relapse 6 months ago it was like I just stopped my meds I became very tired very easy and have recently had an ICD fitted they have tweaked my meds but I can hardly walk Any time in the day (about 10 meters) without getting really out of breath having to stop and rest the trouble is getting to see my cardiologist is harder than seeing the queen I have lots of questions but my heart nurse is not very helpful any advice please from a desperate Dad

2 Replies

Hi. Sorry to hear you are having such a bad time with your cardiomyopathy at the moment. I think your best port of call would be to phone the BHF Heart Helpline for their advice. Number is 0300 330 3311, open during office hours. Hope you feel better (and get to see your cardiologist!) soon. All the best x


Hi Dazfeas, I'm really sorry to read about the recent change in your symptoms. In my opinion, both your heart nurse and your cardiologist would/should want to know, so I would get in touch and request an urgent appointment. One tip to speed this up is by making it clear to you will take a cancellation. Also get your GP to help you secure the appointment. He and she can visit you at home, fully assess you and initiate some tests while you are waiting to see the specialist as well as conduct a medication review. In the meantime do call our Helpline where you can speak to one of the cardiac nurses and they can try and help answer your questions. Hope that's helpful and all the best, Maureen


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